The Choices We Make

When I made the decision to come to the hospital, it was not an easy one. The way I was feeling, my energy level, my increased cough, my increased mucus production, my lung pain and my lung function test results all pointed to an easy decision, but it was certainly not so.

Mandi and I had been planning on a trip to South Carolina with my father-in-law and mother-in-law and family friends for months. The tickets had been purchased the schedules rearranged and we were ready to go. That "we" is now just Mandi and Mckenna. They left on a plane for South Carolina this morning.

It's funny as it seems every time there is a decision whether or not to come into the hospital, there is always a balancing act. I have to decide how to weigh the perceived sacrifices with the hopeful
outcomes. And really, the hopeful outcome is the only reason I come into the hospital. If I didn't have that hope that I could and would get better there be no reason for me to be in here. Thankfully I still have that hope, and have never lost it. When I come in for a tune-up, I do get better. I do become the best version of myself. It make take 2 weeks, 3 weeks or more, but it does happen.

So what led to this decision? The easy answer is that my lungs felt beat up. I was unable to exercise like I'm used to. I found myself getting winded after a flight of stairs. It was hard to take a deep breath because of the pain that I experienced each time. With me, it becomes a vicious cycle. Less than effective workouts contribute to more mucus buildup which contributes to more inflammation which contributes to a harder time breathing. It's up to me to break that cycle. Sometimes I can do it through increased treatments or increased exercise, but other times it takes the decision to come in for a tuneup.

When I went to clinic and talked it over with the team they thought it was a pretty good idea that I come in. They knew about my looming trip to South Carolina and told me that I would have their full support if I decided to try to hang on and make the trip. We all knew that the decision to come into the hospital would mean that I was choosing not to go to South Carolina but to go into the Hole. It was not an easy decision, but there is no doubt that there was a right one. I had to put my health first.

I don't have many regrets in life, but as it relates to CF, I have one big one. There was a time in my life when health certainly did not come first. My social life came first. My work came first. My girlfriend was my priority. My friends won out over my treatments. Delaying hospital stays to go on vacation was the norm.

And after years and years of making those decisions and putting everything else in front of my health, I am now paying for it.

I have to work so hard now to stay healthy. I have to put in so much time each day to keep my energy at a level that my wife my daughter deserve. So much time is spent doing my treatments or at the gym that I wish it could be spent at the park with my daughter. I now have to miss family vacations to come into the hospital.

If I would've kept my health first, as the first priority in my life, would I have to make the sacrifices now? Of course I do not know the answer for sure, but I'd be willing to bet that I wouldn't have to work so hard now. I wouldn't have to take so much time away from my family when life is really important. I probably wouldn't be missing this trip to South Carolina.

That's the bed I made and now I lay down in it.

So what's the point? If you're reading this and you're struggling with putting your health first, I beg of you, don't make the same mistakes that I did. There will come a time in your life that you will wish you didn't have to work so hard because of choices in the past. When we were younger many of us thought that we were just “living life”. Let me tell you as a man with a wife and a daughter - This is life. I'm now in a life that matters. I have two beautiful girls who count on me to be at my best. That doesn't mean that if you don't have a family in the future you won't be living “the life”. But I promise you that there is something down the road worth sacrificing for. The truth of the matter is you're going to have to work hard now or work hard later, but hard work and sacrifice will happen.

I encourage you to make that sacrifice now, and to work hard now, at the chance that you won't have to work so hard later.

Running Rehab: An Unscientific Experiment

Guest post by Kay

After being diagnosed with CF at age 21...I had spent the better part of my life telling myself that I was an exception to the rule, that my case of CF was mild and falsely thought there were probably no others with the disease that were doing so well. Sure, I had my moments during exacerbations when I worried and wondered if I’d get to see my daughter grow up...but for the most part I did as I pleased and was hospitalized on average once a year. I’d been a runner since h.s. track and when my daughter was young I had a sign taped to my alarm clock that read “RUN OR DIE” so I’d get up and run before her Dad went to work. But over the years my FEV1 had inched down slowly and I’d left the world of the moderately affected and dipped under the 50% FEV1 level and into the world of the severely affected. Life got harder. It became difficult to jog. I’d get so winded after just a quarter mile jog that I took to doing a jog/ walk type of workout and even that was so hard I began to skip more and more days. My daughter had asked me to run a 5k at a 1/2 marathon she and her dad were doing and when I told her I couldn’t even run a mile she gave me a bit of a hard time saying “anyone can run a mile...you’re just using CF as an excuse”. Ugg. So a week later when my nurse coordinator forwarded a Jerry Cahill video where he was running with oxygen...I was all over it!

I contacted Jerry through Facebook and he told me about using a wrist oximeter and putting the “tank” into a camelback backpack for jogging. I asked my Doctor who always had a witty sense of humor if I used oxygen for exercise if I would become oxygen dependent...his reply “we are all oxygen dependent” haha. But “no, it won’t mean you’ll need to supplement O2 for everyday things”. It took a few weeks and a little experimenting, first with liquid oxygen (not good it can’t take the jarring of the jogging and all the O2 would expel after just a short distance). I exchanged 3 back packs until I got one that had more padding and was comfortable to carry the M6 tank. And then I got in a routine...quickly running 3 and 4 miles at a time. I decided to train for the first annual “Run to Breathe” that Jerry was organizing for BEF in Central Park and invited my daughter to join me. Jerry provided encouragement to the jogging posts I would make on Facebook and we joked about being the last ones on the 10k course. Raceday came and the adrenaline and crowds had me jogging at a pace much faster than home. Central Park is relatively flat in comparison to the Fox River Valley where I trained. I was pleased with the time and my daughter and I had a fabulous 4 day trip to NYC.

Back home from the trip and I wasn’t feeling particularly well. When I went to the clinic I had the worst PFT results of my 49 year old life with Cystic Fibrosis. FEV1 was 36%. It scared me. Badly. I had been getting to know other CFers through social media and a few were on the transplant list. One was at 30% FEV1 so a personal score of 36% was alarming. I did not understand it. I’d been running about 20 miles a week and instead of getting better I was getting worse. I’d lost a lot of weight which had never been a problem as I am pancreas sufficient. But with all that running I could not eat enough. I got a tune up and recovered to 42% where I stayed for a couple years.

Chicago winters can be rough and long. This one has been the worst in my memory with temps dipping down to -18 degrees F at times. I was sick in October, choosing to do a 21 day tune up, and then mid December a bug that was going around at work settled in which took me six weeks to get over with Cipro and Prednesone. January rolled around and I still wasn’t myself and I looked at the option of IVs again and turned around and literally ran in the other direction. I decided to hire a running coach and see if having someone with expertise in building a program could help motivate me. I’d been reading the journey about those pre and post transplant go through with a mandatory “rehab” period both before and after. So Coach GP and I embarked upon a Running Rehab program for these old CF lungs of mine. He said “I’m going to be in your pocket”. By that he meant he would hold me accountable for the workouts and text me and ask me what I’d done each day. Coach is in the NYC area and travels a lot, so I’ve never met him...but working virtually worked very well. We spent a couple weeks seeing what I could do and just getting used to the idea. It was all on the treadmill as cold air is not my friend. My knees hurt, I was tired...but determined. Then he gave me regimented workouts that included interval training and progressive runs. I chose to just “do as I was told”. It made things simpler to just be assigned a workout and do it and not have to make a daily decision on what to do and how far to go. Wimping out was not an option. I let him be the boss of my schedule. The schedule was tough as I work two jobs but I fit it in most days, sometimes getting to the gym at 8pm, sometimes awakening at 5am to fit it in. A month went by and my knees no longer hurt. One day I started running without hooking up to the O2 tank (just forgetfulness) and thought, wow, my O2 sat seems ok...lets see how far I can go without it. I made it a full mile before the O2 sats dropped below 90%. Psyched!!! I hooked up for the rest of the workout and considered that bit of un-supplemented running true progress! Days that followed when I tried it again did not fair so well only making it to 1/4 mile before I needed O2. Every day is different, I learned. Storm and weather shifts affected my lungs, stress at work affected my lungs, but I started to see that pushing myself to run on the worst of those days ALWAYS had me feeling better after the run.

Then, the day came around I’d been training for. The clinic appointment. The day before I’d come home from work to do treatments and had a terrible coughing fit that lasted 30 minutes. It wore me out and my lungs reacted by tightening up. I thought ugg, I’m going to do terrible on my PFTs tomorrow. The next day arrived and I jumped a train and headed down to the city for my appointment. My lungs felt really tight and my expectation was that I may need prednisone to open them up again and if my FEV1 was low...I might even have to do IVs. Ugg. But, my first blow into the tube....showed 52%. Wow. Even though I wasn’t feeling particularly well, my airways were far more functional than before the running rehab. I’m optimistic my score would have been higher if not for those storms rolling in and putting me in a funk.

So, “what have you learned...from the past month Miss K?”, Coach asked. “I have good days and bad days” I said. He said “you respond well to multi tier training on many levels but it has to be very carefully measured between both not overdoing it and undergoing it”. It had become apparent that just running long, slow runs and adding more and more miles as I had done previously was not the right approach. My current program has me running a mix of intervals and progressive runs Tu, Th, Sat.  On MWF & Su I am doing weights and some cross training. I plan on working out 7 days a week, knowing I may miss one as I listen to my body and may need to take a day of rest when muscles and resolve are fatigued. Running more and running longer didn’t seem to pay off the way varied running has and please note: it’s also way less boring :-)

I’d recommend if you’re having trouble kick starting yourself to find a coach to work with. Athlete training programs used for healthy folks can also do great things for those of us with CF. A coach that can understand that there are some limitations but also not be afraid to push may be just the thing to get you started in the right direction. Exercise IS medicine!

Does CF Consume Your Life?

Do you feel like CF consumes your life?

I get asked quite a bit if it feels like CF consumes my life since I do so many treatments and make sure that I exercise daily. I of course don't feel like my life is all about CF, but I thought it would be handy to put it into numbers to see if I could make it more clear. So, for this little exercise, I'll take 2012 vs. 2008. I'm taking these two years because they seem to be the average year before and after I got serious, or better put, "re-serious" about my health.

2008 in hours
Treatments: 547
Exercise: 182
Hospital Stays: 1680
Total hours devoted to cystic fibrosis: 2409 or 28% of all available hours

2012 in hours

Treatments: 1095

Exercise: 547

Hospital Stays: 720

Total hours devoted to cystic fibrosis: 2362 or 26% of all available hours

So when you look at those numbers, it looks like a wash right? I'm still devoting basically the same number of hours per year towards "taking care of business" when it comes to CF. However, looking deep into the numbers you'll see that in 2012 I am spent double the amount of time doing treatments, triple the amount of time exercising but less than half of the time in the hospital when compared to 2008. I don't know about you, but I would MUCH rather be doing treatments and exercising vs. being in the Hole. 

There are a couple more important numbers however that need to be thrown into this equation:

2008 lung function

Highest high: 79% FVC 68% FEV1

Lowest low: 64% FVC 54% FEV1

2012 lung function

Highest high: 87% FVC 74% FEV1

Lowest low: 78% FVC 63% FEV1

**It should also be noted that

a) I started a new predicted model in 2009 that would have actually had my 2012 numbers even higher compared to my 2008 numbers and

b) Since "on average" "they" say that "lung functions declines by 2% per year", my net gain is actually even higher!

Now, CF is definitely more about lung function and those numbers don't always correlate with how I feel. I can tell you this without a doubt though, if I had to quantify how I felt in 2012 vs. how I felt in 2008, it wouldn't even be close.

In 2012 I could...

breathe better.

laugh longer.

run further.

sleep sounder.

expect a brighter future.

So if 2012 was an average year of awesomeness, 2008 wouldn't have even of registered on the same scale.

We all know that cystic fibrosis is about more than just numbers. But sometimes, numbers can help make things more clear. By looking at the numbers above, it's clear that the more I did for my health, the more my health did for me. Sure, a quarter of one's life devoted to anything seems like a lot, but I can tell you this, I've enjoyed the other 75% of my life a whole lot more in 2012 than I did back in 2008.

I Choose to Look Outward

So, I don't really ever go into detail about my faith on this blog or do too many scripture quotes (although I hope it apparent that I'm a Jesus freak), but after my bible study this morning, I wanted to write about what I read.

These verses in Romans 4:19-21 in particular caught my eye and got me thinking. They say:

"¹⁹ Without weakening in his faith, he faced the fact that his body was as good as dead—since he was about a hundred years old—and that Sarah’s womb was also dead. ²⁰ Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, ²¹ being fully persuaded that God had power to do what he had promised."

Let me first give you just the quick backstory...

The "he" in the verse above refers to a man by the name of Abraham. Abraham was a great man of faith and ended up being used by God in big, big ways. God promised Abraham that he would have a child with his wife Sarah. Now, at face value this seemed like a pretty crazy promise since Abraham was about 100 years old and Sarah was well past her child-bearing years. So what did Abraham do? He simply believed God would do what He said He would do. Abraham didn't focus on his present circumstances and weigh them against God's promise. He simply turned his focus completely outward to the God of the universe while ignoring any inward struggle his circumstances may have provided. If you know the full story of Abraham, you'll know that he was not a perfect man, not even in this regard, yet God still used him and counted him as righteous to be the "father of many nations"(the simple fact that God never seems to choose people who have it all together to accomplish His Will encourages me every single day).

So, why did this verse stand out to me this morning? I don't really know. Maybe it's the fact that there have been times in my life where it seemed that because of my present circumstances, there was no way that God could use me to accomplish great things. Maybe it's because I feel so strongly that God has His Hand directly in my life guiding me through daily decisions that will ultimately lead to me being with my family for a long, long time despite what the statistics say. Maybe it's because I was told that I would never be a father, yet I had a desire to be a father at a very young age, never doubting that God would provide me a family. Maybe it's because my whole life someone has reminded me that the "median age is this" or the "life expectancy is that", but God seemed to always remind me that He was bigger and more powerful than any disease life could throw my way. Maybe it's because any time I start thinking that my God doesn't care, is too busy or maybe even to small to deal with the circumstances in my life, He always shows up in a BIG way.

Here's what I know. I serve a God that keeps His promises. I serve a God that promises that His Will will be done. I serve a God that uses the imperfect, the sinners, the diseased, the outcasts, and everyone in between to do His Will. I serve a God who can use a disease to accomplish His Will. I serve a God who doesn't waste pain. I serve a God who is not done with me yet.

"When there is no contest, it is true, no one, as I have said, denies that God can do all things; but as soon as anything comes in the way to impede the course of God's promise, we cast down God's power from its eminence." - Calvin

My prayer is that I can become even more encouraged by the fact that God has me right where He needs me. I pray that instead of focusing inward on my present circumstances, I can turn my focus outward, and have my faith strengthened knowing that God keeps His promises and has the power to overcome anything that this life has for me. I hope that I'm a man that trusts God in all of my circumstances, not just when life is good, but when life throws me a curveball...or a disease.

My "Get Healthy" Checklist

Guest blog by Ashley Coleman

If you asked me who I am and what I am about, you probably wouldn’t ever hear me being defined by my Cystic Fibrosis. First and foremost, I am a devoted follower of Christ. My passion is to help people find truth. The truth sets us free. Where does freedom come from? Jesus Christ. I’m defined by few things outside of Him, but Ronnie has asked me to write about my Cystic Fibrosis journey, and so I will.

Stay with me as I make this long, long journey into a few paragraphs. At the end of February 2012, I noticed I was getting sick. I had just finished a long day at work and had a really lame workout because I was so fatigued. I bought some groceries because I knew I would need a few days of rest. Little did I know, I wouldn’t be able to carry those groceries in my house. I was so out of breath, I had to call my mom to come unload my groceries. This was a Sunday. She convinced me if I was still unable to make it up the stairs without getting out of breathe that we would visit our local ER (not my CF Clinic that is 90 minutes away). Needless to say, I didn’t improve and I found myself staying in the local hospital for a night without them knowing what to do with me. I was sent home with some oral antibiotics and not even given a PFT.

A few days later, I found myself walking the halls of my CF Clinic, Tulane, to my doctor’s office unable to even carry my purse. Once again, Mom to the rescue and after much convincing my doctor admitted me. I stayed 3 nights and was released just in time for my 25^th birthday. 20 pounds lighter, lung function at 57%, first PICC line, first CF hospitalization, first real CF exacerbation; I was scared.

57% was a number I had never seen. Not me, I am healthy. Not me, I don’t really have CF. It was time to wake up and get out of this cozy place of denial and take control of my health and well being. For two weeks, I did every single IV and breathing treatment and even walked some. There was no getting past this; it was now or never. Wake up and deal with my CF or just lay here and die, literally. It was life or death for me. I did improve to 78% but that wasn’t good enough for me.

I was born a fighter. Not literally, but figuratively. I was not going down like this.

As soon as I got my PICC line out, I was cleared for vigorous exercise again and could get super sweaty. I grabbed my Insanity DVDs and sometimes did two workouts a day, walked my dog, did every single treatment, and went to the gym. I packed on some weight, a little more fat than I wanted, but over the past 18 months my body composition has changed. I have packed on solid muscle and improved my lung function to 95%. I went from 86% to 95% in just three months. At 86% my doctor’s words were “don’t expect too much improvement from here” so just imagine his reaction when he saw 95%!

My biggest and only change is exercise. I workout 30-120 minutes per day, 6 days a week. Every day I go to the gym to workout a different muscle group. I would recommend beginners to start with a 3 day a week full-body routine, but I have been weight lifting for about 3 years now. I also do some sort of cardio. Lately, it’s been Insanity videos, swimming, and running. Now that it’s getting cooler out, I am going to be cycling more. I also walk my dog 1-2 miles a day and I look forward to that increasing as well. My diet consists of anti-inflammatory foods 5-7 days a week.

So what do I suggest to improve your lung function and quality of life?

•      Add things before you start taking away. Add the anti-inflammatory foods before taking your daily Doritos away. Eventually, you will begin to relate how you feel to what you are putting in your body. FOOD is FUEL. Add a little exercise at a time. You don’t want to overwhelm and burn yourself out.
•       Do what you can with where you are and what you have. What does this mean? If you can walk to the mailbox and back 5 times do it, then do it again the next day and do it 6 times. If you can run a mile, do it. If you cannot afford a gym membership, do your best to fit that in your budget. Join a class at the gym. The YMCA turns no one away for being unable to pay.
•       Don’t do this alone. Get friends involved. Ask for accountability, whether that be friends in person or friends on CF forums. Make a commitment and do it. If you can afford it, hire a personal trainer 2-4 times a week. I am beginning online training if you are interested, but I’m not here to plug myself. A financial investment is sometimes all you need for lasting motivation.
•       Mentally prepare yourself. Tell yourself every single day that you can and you are doing this.  Tell yourself what a good job you are doing and truly believe it.
•       Hebrews 12:11 says, “No discipline seems pleasant at the time, but in the end produces a harvest of righteousness”. I posted this scripture everywhere in my house.
•       Be kind to yourself. You will not change over night. You aren’t where you want to be, but you are on your way. Remind yourself every day of this. Love yourself well enough to take care of yourself.
•        Find a balance. Be diligent with your treatments, but also don’t beat yourself up if you miss one. It’s okay. Find that healthy balance.

Please, let me know what I can do to help. My goal is to see us as a CF community (and human race as a whole), take charge of our individual health – mind, body, and spirit. We can do this. You can do this! Believe me. Believe in you.

Bio: Ashley is 26 years old and lives in Mississippi. Ashley is trying to make a difference in this world, starting with her community while seeking health in all areas of life, freedom, and happiness for herself and others. She hopes to encourage and inspire transformation, not only those with CF, but every person she comes in contact with to be healthy and strong, but most importantly tap into God's perfect plan for their life and walk in God’s promises for all of us. She is a personal trainer and aspiring writer and blogger. She is passionate about life, loving people well, laughing, running, reading, and learning. Ashley believes every day is a journey, an adventure, a learning experience, and another opportunity to live a day full of love and life. Join her on this journey by visiting her blog: http://www.findingtruth1.blogspot.com/ She would also love to hear from you. Her email is ashleycoleman87@gmail.com. 

The First Time Cystic Fibrosis Was Real to Me

**I recently stumbled upon this post written by Mandi way back in 2009. Gives some of you new readers a good glimpse into the beginning of our relationship and how awesome Mandi is for sticking around!!**

Ronnie's carefree attitude always makes Cystic Fibrosis feel so easy; so manageable. Sure he has his good days and bad days, but for the most part CF doesn't play much of a role in any given day. However, I have come to learn that the CF Ronnie portrays and the CF Ronnie has are two very different things.

After dating for about 6 months, Ronnie and I went to China together to visit my parents. In China, he experienced the perfect storm of a chest cold, polluted air, cigarette smoke galore, hemoptysis, and one long flight back to the US, but I didn't realized just how bad off he really was. I knew he didn't feel well on our flight home. In fact, I spent the entire 12 hour flight watching him as he fell in and out of sleep and consciousness. I'd watch his chest for movement and nudge him if it looked like he was "gasping" for air more than he normally does when he's asleep (anyone else breath like that? It almost sounds like a slow, drawn out bull frog croak). Still I wasn't nervous. He'd give me a reassuring smile here and there, crack a joke or two, and let me know he'd be fine.

We got him back into the country and into the emergency room. We sat there for hours. Ronnie's sats were low enough that the nurses seemed quite alarmed, so they put Ronnie on oxygen, and kept upping the number of liters, from 2 to 4 to 8. Ronnie didn't look like he felt the greatest, but still he gave me a reassuring smile, cracked a joke or two, and continued to tell me he was fine. Around 3 am, he told me to go get some sleep. "I'm just waiting for a room," he said. "Go sleep and I'll be all set in the morning when you get up." So I did.

When I got to the hospital the next morning around 7, I found him in ICU. He was sound asleep, hooked to all sorts of machines making all sorts of noises. The most alarming of all, however, was the bipap. I later found out that they were unable to keep his sats up with oxygen alone, so they had him on the bipap to attempt to get more oxygen into his body. I sat there just watching him. There was no smile for reassurance that I could see through the bipap mask, no jokes, no words of encouragement, or words at all. It was the first time I'd seen him truly sick. The first time he just didn't feel well enough to bring light to the situation. It was the first time I saw that CF could change the game within a split second. It made me realize how much I don't know about CF. It made me understand that it's a very, very serious illness.

That being said, it also made me realize how much of a fighter Ronnie is. Uncomfortable, in pain, uncertain: He just kept on. And as each day passed, he just kept fighting and kept improving. It wasn't long before his reassuring smile was back, his jokes started flowing, and his encouraging words soothed my worried mind. So I guess the best part about the first time CF was real to me, was that I realized no matter how much CF can do, Ronnie will always do more.

The Lucky Seven: Intensity Class

I know Mandi and I have mentioned this before, but we do a class at our gym called Intensity every Monday, Wednesday and Friday (and sometimes more if we feel like being mean to ourselves). The class is, well, INTENSE. It is 45 minutes of trying not to barf and doing a variety of lifts, jumps, squats, swings, ups, downs and everything in between. I absolutely love it, here's why:

1. Sweat - Whenever I sweat, it feels like I'm working hard. In this class, I'm drenched with sweat within the first 10 minutes and I drip sweat like a madman for the full 45. There are times when I can actually wring sweat from my shirt.

2. Coaching - There is a personal trainer who runs the class and comes up with a different set of moves each time. He's also there to correct improper form and to motivate you when it feels like you can't push any longer.

3. Variety - Like I said above, the class is always different. It's pretty much impossible to ever get sick of it. Only thing I could get sick of is working so hard!

4. Partner - Having Mandi there with me is awesome. Not only does she motivate me by kicking my butt every class, but she looks super hot doing it. Seriously, you should see her in that class. Rarely is the prettiest girl the most fit one also...and she's my wife! #winning

5. Gym friends - We don't have any actual friends in the class, but we have plenty of gym friends in the class. It's like we're all part of the same team when we see each other in other parts of the gym or outside of the gym in the community.

6. Benefits - I of course like the benefits of kicking my butt. I always have more energy when I work out consistently and I usually sleep better too. My lungs remain clearer longer and I have more capacity when I take deep breaths. And I can tell you one thing, that class forces me to take MANY deep breaths!

7. The End - I like the end of the class for a handful reasons: 1) It's the end of the class 2) I no longer have to work to keep my food down 3) I can catch my breath 4) I can see results 5) I feel a sense of accomplishment 6) Lunch time is coming up next! 7) Recovery

If you're not active in something that gives you a sense of accomplishment and pushes you beyond what you think you can handle, I would highly encourage you to find a class at your local gym. If you have the commitment level and motivation to push yourself that hard, then go for it! I know as for me, I would never, ever push myself as hard as I do on my own, as I do in Intensity.

Two Important Lessons from My Mother

To say that my mom passed down many lessons to me that carried on throughout my life could be the understatement of the year. I could probably fill an entire book with all of the wisdom that she passed down to me over the years. Little anecdotes and advice that I've drawn from constantly to either get through a certain situation or just draw strength to continue motoring throughout the day. But as I've talked more more about my life with cystic fibrosis, I began to realize two very important lessons that shaped much of my life up until this point.

These two lessons play off each other in perfect harmony. They are:

1.  Not everything bad that happens in my life is a result of having cystic fibrosis.

2.  There are many good things in my life that I may have never experienced if I weren't diagnosed with cystic fibrosis.

Let's look at the first lesson. I don't think it's an overstretch to say we live in a “blame society”. We are always looking for someone else or something else to blame for our set of problems. Whether it's blaming the dog for eating our homework (even though we left it within his reach), blaming our boss for our cruddy job (even though we enter work each day with a chip on our shoulder) or blaming lack of time for not exercising (even though we still get in our 1 to 2 hours of TV a day). It's just so much easier to blame others or some external force for the bad things or bad situations that happen in our lives. It's much tougher to look within, or look into a mirror, and at least partially blame ourselves.

Cystic fibrosis can be the perfect scapegoat. I used to think that there was no way I could ever run any sort of distance because I had cystic fibrosis (even though I had never attempted to train). There are days that I thought I must feel sick because my CF was getting the best of me (even though there was a virus going around at school). I'm sure there were days that I used cystic fibrosis for being the reason that I acted out and didn't have respect for authority (getting to the root of that issue would take years). I'm not so sure I ever verbalized these, or even consciously thought of them, but I wouldn't be surprised if they were at least subconsciously there.

Maybe my mom recognized that. Maybe that's why I vividly remember my mom saying many times, “Cystic fibrosis won't always be the reason that bad things happen. Cystic fibrosis won't always be the reason that you don't get your way. In fact, rarely will cystic fibrosis be the reason. The reason? It's called life and we all are living in the same one."

I'm so thankful that I was able to carry that on to adulthood. There's no doubt that it played an active role in me pursuing to make a positive impact on this world. If I couldn't blame CF, then I was going to use it to motivate me to do good things.

The second lesson plays off this first one perfectly. When I look back I can identify so many things that have happened in my life that would not have happened if I'd never was diagnosed with cystic fibrosis. More importantly, there are tons of people who play a present and active role in my life who I may have not met if it weren't for CF.

My mom would always be quick to remind me when I was a child of this and now as an adult, I can see it clearly. This continues to play out today. I can't count the number of contacts, acquaintances, and friends I have as a result of being a part of the CF community. Diving in and serving the CF community is what I strive to do every single day. I can't imagine myself doing anything else. Would I be doing this without the diagnosis? No way.

The biggest role CF is played in my life is that of a sculptor. I'm convinced now more than ever that cystic fibrosis molded me into the man that I am today. The man that my wife fell in love with. The man that Mckenna calls "daddy". Many out there believe they'd be a different person if they weren't battling CF. I agree, I would be different, and I don't think I would like that different version of me as much. I know that others wouldn't.

And again, to quote my mom, “You can either use CF to hold you back, or to propel you forward.”

I choose the latter. What about you?

Top Ten Tuesday: Things Learned Through (and Loved) About Running

It's not Monday, but I'm (Mandi) posting anyways because when I posted yesterday I realized the last post before mine was Thursday's...clearly Ronnie needs a little back up.

I have been re-inspired to run the last month. We have been doing our HIIT classes the last 3 months and I have put running on the back burner, but while on vacation I went on a couple long runs by the ocean and fell back in love (does anyone else have a love-hate relationship with running?) I also did that half marathon last week, which drove me to want to step up my running game. I decided this week to increase my miles and enjoy some time with my feet on the pavement. Here are the top ten things I have learned through running and that keep me in love:

10. Practice makes perfect. Very few people can lace up their shoes for the first time and go for a long run. It takes time. While I love things that I'm good at, I also love a challenge and knowing that I can continually get better at something.

9. My body will adapt. I once had a soccer coach tell me that, "your body is unlike any other machine, it will adapt to the stresses you put on it." This has been one of the most monumental statements in my life. I repeat it to myself during long runs. I encourage myself with it when I'm in our class and it feels like I can't do another clean and press or another burpee. I tell it to myself when I don't feel like working out. Because I know that if I push myself I get better, but that the opposite is also true. If I sit around, my body will adapt in the wrong direction. Running has showed me this without fail, every time I step up my running, I can run farther and farther.

8. My brain is more powerful than my body. There are times when my body screams to stop. To walk. To take a shortcut home. But somehow my mind can overpower what my body is telling me. I have to admit, the positive self talk in my head is something I rarely share with people, as it may be some of the most embarrassing mental dialogue of all time. But it is incredible what your body can do when your mind tells it that it will be done. I may or may not think to myself "legs engage" before a big hill. There's a chance I have "raced" the mailman down a stretch of road while trash talking him in my head, "I'm on foot and keeping up...what's up now?!" (Please erase that from your brain). I repeat over and over, "you're not in pain, you're just tired. Being tired isn't a good enough excuse to stop," probably 35 times on any given run. It works every time. #Brainsareawesome.

7. I will never be the best - and that's ok. I know I will never be the best runner on planet earth. For a type-A who's a perfectionist, not being the best at something makes me uneasy. I am driven by success. I like to be the best (yes, I said it...and I know I'm not alone, so no snickers, peanut gallery). But running is one thing I know I will never be the best at. I will never win a race. I will never be the fastest or be able to run the farthest. There's something healthy about being forced to sit in the middle of the pack - and learn to feel comfortable with being average.

6. I am intense. I am certain my husband, brother, and parents all just laughed reading that. This is no secret. I'm pretty sure even my dog knows this about me. But running has taught me just how intense I can be. I can push. I can feel like I'm about to faint and still put one foot in front of the other. In fact, Ronnie refuses to run with me, in part because of my intensity...but also in part because...

5. I can be happy even if I'm not comfortable. No one likes that person during a tough workout. I am that person. I have learned in a big way through running that my feelings don't need to be dictated by how I feel. If I'm uncomfortable, it's healthy to be joyful in the place you currently are. Running had taught me to be comfortable with discomfort. To look around at beautiful surroundings while my body aches. To thank Jesus for two legs that burn. I have tried to let this bleed into other aspects of life. In fact, I know for certain it is learning this lesson through running that allowed me to joke throughout my unmedicated birthing process - the reason I was giggling and smiling between pushes. Through running, discomfort never became an excuse for a bad attitude.

4. People bond over shared interests. Ground-breaking? No. But seriously, how cool is it that two runners passing on the street almost always smile or wave at each other.

3. The best thinking is done alone. Sometimes the world is noisy. We live in a world of constant communication and influence from others. Running allows time alone with me and my thoughts. And my best thinking can be done when I'm alone with my thoughts.

2. I'm competitive with myself. I am a competitor. I like a good competition. I really love competition with myself. I like to better myself. I like to show the me of yesterday what's up. Running has showed me this through and through. It kills me if my run today was slower or shorter than yesterday. I've learned I really can refine myself more through competition with myself verses with others. I can't always be better than others, but I can always be better than I was yesterday.

1. My body is a gift. I have been given all the tools I need to be active. I have been given a machine that will get up and move. We all have our insecurities about our bodies, but when it comes down to it, if I'm capable of getting out and running, I know I need to thank God for what he has blessed me with.

It's Good, but It's Not THAT Good

I've heard a lot of different reactions to my blog a few weeks back about the clinical trial I'm currently on which will remain nameless. One particular reaction or thought that I wanted to address goes some like this,

"Oh, that's awesome!! I can't wait until it's available because I hate CF and I hate treatments."

I guess I'll just be the one to put it out there - You can take any med currently being studied in the pipeline, and if approved, it will still not take CF away. Now this can mean different things to different people. Obviously, there will be people who get on the right "miracle" drug and it totally flips their life upside down and they start living as though CF didn't exist. I have a feeling that will be rare.

I think it's safe to say that most of us will still feel some if not all the effects of CF daily, but hopefully, less often and to a lesser degree. Many of us will still have to do treatments if we want to be the best version of ourselves.

Case in point: Today's workout was extremely hard and I was dragging booty the entire class. It was hard to catch my breath. I felt low on energy. I was doing more resting than usual and I was light-headed most of the class.

I thought for a second, "Where are you now _______ (name of study drug)?" You see, just because I've had fantastic results from the drug, or the placebo, doesn't mean that CF, or in most cases, just regular life and human reactions, go bye-bye.

I got to bed later than normal yesterday. I didn't sleep as well. I ran/walked 4 miles yesterday and I'm pretty sure my legs remembered. I ate like a 20 year-old college student this past weekend. I'm sure I could have given better effort during my treatments while in San Diego. I was out of my regular routine for 3 days. I think it just all added up.

Here's my point, no matter what drug comes out next, it won't change the fact that we're going to have to work hard. We're still going to have to make good decisions and treat our bodies with respect. The hope of course is that when we do screw up (as I am king at this) the penalty to pay maybe won't be so steep. Maybe, and Lord willing, the next generation will have no clue what "our CF" feels like. All of this of course is only speculation.

The last thing we can afford to do is wait on a med that may or may not be a "game changer". We all need to keep our nose to the grindstone and kick some CF booty each and everyday. This looks like doing our treatments, living an active lifestyle and putting our health first. If we can do that, there is no doubt that we will be the best version of ourself.

I'll leave you with this quote from the great Larry Bird which I think nicely ties up this blog with a nice ribbon. He said, "I find that the harder I work, the luckier I get."

Couldn't have said it better myself.

Some Feathers May Get Ruffled

Ever so often, I'll write a blog on here that will ruffle the feathers of some in the CF community. It's rarely, if ever, intentional, and my intent is never to upset my readers or make them feel bad. It's something that goes along with the territory I guess. I think an ex-preseident of ours said it best: 

“You can please some of the people some of the time, all of the people some of the time, some of the people all of the time, but you can never please all of the people all of the time.” - Abraham Lincoln

Another thing that goes along with the territory is negative responses from some of my readers. These include, but are not limited to - personal attacks, attacks on my family, unfounded accusations and attacks on my faith. 

Fortunately, the positive reactions outnumber the negatives ones about 100 to 1. I always keep that in mind when someone decides to take it upon themselves to try and "hurt me" because I "hurt them". 

I'll tell you what the best medicine is though, it's getting responses like the one below to my blog yesterday:

Mama: Hi Ronnie, I just want you to know we are so grateful for you and how encouraging you are! [Son's name] is doing his treatment that he does not want to be doing and read your post about how you did not do your treatment like you should of and he said, "Man, mom, Ronnie is so encouraging!!!". Thank you sooooooo much ! 

Me: I'm so glad that he can find encouragement from some of my posts. My hearts desire is that others, the next generation, learn from my mistakes and don't make the same choices that I did. If I can change someone's life as a result of my stupidity, I'm glad to do it. Thank you for sharing that with me. Made my day!!! 

Mama: Are you kidding, you just helped me stop nagging, I get tired of hearing myself, too.

That's EXACTLY why I do what I do. I've been very upfront about all of the bad choices I've made. I talked about the different tricks that CF can play that I fell for hook-line-and-sinker. I write because I hope that people like the Mama above and her son are reading. I hope that something I say can help them make better decisions than I did growing up. Simply, I hope that the next generation treats themselves much better than I did.

I'm often reminded by this quote of a fellow cyster in the community that I think put it best:

"I wanna help as many CF'ers as possible. It's therapeutic to think my failure could be someones success." - Michelle Matta

I love it. After hearing that, I just knew that she had to write a guest post on RSBR, which she did, here. I reminded her however that failure only happens when we give up and it's an outcome of deciding not to try. Both failure and success comes in many forms and is different for each person involved. Fortunately, I've rarely seen anyone in the CF community flat out fail!

Lastly, I'd just like to thank all of you who send kind notes, emails and encouraging comments. You keep me going. I'll continue to write as along as there are people out there who will read, and hopefully, leave this blog feeling encouraged, motivated and/or inspired. 

I've come to realize this -  The feathers of my generation may get ruffled while I encourage the next generation to fly higher and straighter at any cost.

I wish I wasn't FORCED to do treatments.

I remember the good old days as if they were yesterday. Those were the days I was able to do treatments on my own schedule, whenever I wanted, and work cystic fibrosis around my life. Those were the days when my doctors recommended 2 treatment sets a day and 3 if I wasn't feeling quite up to snuff. Those were the days I was running around like crazy and it felt like I barely had enough time to get in even the 2 recommended treatment sets a day.

In those days my treatment sets consisted of albuterol, Pulmozyme and the Vest. I only did TOBI when I was in the hospital, or when my docs convinced me that I needed a month or 2 at home. If I could go back to the good old days, I would. (If only to correct the mistakes I made concerning my health)

If I took better care of myself when I was younger and actually had less responsibility and no one truly dependent on me, there is no doubt that I'd be a better version of myself today. I firmly believe that I'd be a better husband, father and friend.

It's funny, because now I have real responsibility in my life and I do truly have less time for treatments and exercise.  Back in the day I was filling up my time doing many things that didn't have any real impact on the world nor did I have a family that I was required to put first. I often think back on the “good old days” and wonder what in the heck was I doing?

[SIDE NOTE: They wanted me to do at most 90 minutes of treatments and 30 minutes of exercise a day back in the "good old days". Today, I often do 90 minutes of treatments in one sitting. It's not uncommon for me to put in 240 to 300 minutes of treatments and exercise each day.]

Back in the "good old days" doing my treatments was a choice, a choice that I wish I would have made more often. I would have been much better served to have treated my body well when I was healthier than to take my health for granted, as I did, and end up at a place that I wish I never experienced.

For those that are new to this blog I'll give a very brief summary of what really changed my CF journey:

When I was younger I was very active and I never missed any treatments. I was very active and I didn't miss any treatments because those were the rules that I had to abide by to live with my parents. When I moved out I started making my own choices with regards to treatments and exercise. I didn't always make the best choices. I saw my lung function steadily decline from 97% in 2000 (the year I moved out of my parent's house), to a baseline of 70% in 2007 (I was in the hospital for 30 days every 3 months),  to an all-time low of somewhere in the 20's in 2009 (I was too sick to blow in the ICU and blew a 31%, 10 days into a 52 day stay). I decided during that hospital stay that I could no longer exercise only “when I had the time” and that 2 treatment sets a day (which I was actually doing consistently at this point) just simply wasn't going to cut it anymore. I wanted to live.  

After leaving the hospital in March of 2009 I made a dramatic change. I started exercising and/or working out every single day. I started doing 4 treatment sets a day, no matter what. I added any additional medication that I could take. I added an inhaled antibiotic every month. I decided that if I was going to take care of myself, the way that I should, I was going to go all in. If I wanted the results I was aiming for (an FEV1 of 75% after they told me to be happy if I got it up to 55%), I knew that my health was no longer a choice, but a "have-to". 

Through hard work, dedication, and the grace of God, I was able to regain and surpass all of the lung function that I had lost in the previous 10 years. 

I sit here today writing this blog feeling better than I have in a long, long time. The cool thing is that I'm able to say on most days that I feel better than the day before. I recently had an FVC of 92% and that's something I haven't done since 2001. My FEV1 baseline is 75% now, and I haven't seen that baseline since 2003. My life is fuller and more enjoyable than at any time in those years I was making my own decisions concerning my health care.

It's not all good news though - I am FORCED to do treatments. I am forced to exercise. I am forced to put my health first.

If I don't put my health first, even for a day, I feel it. I can no longer miss a treatment here and workout there and not feel a negative impact from that decision. If I want to be at my best, I have to do all my treatments; I have to get to the gym; I have to put my health first.

Back in the “good old days” I could miss a few treatments without consequence. Back in the “good old days” I could sit on the couch for days on end and still have the lung function of most of my peers. Back in the “good old days”, health could be more than a few notches down on my priority totem pole and I'd still be able to live a full and active life.

Not today.

If I miss treatments today, my lungs feel tight, my breathing is suppressed, and my lungs are junky. If I don't move around for an extended period of time, I feel incredibly lethargic, I get very achy, and taking a full breath is nearly impossible. If I don't put my health first and at the top of my totem pole, I wouldn't be able to take Mckenna to the park every morning; I wouldn't be able to tackle life with Mandi; I wouldn't  be writing in this here blog.

When I look back on the “good old days” I realize that though they were good, they weren't great. In all honesty, they were pretty pointless.

The love I had for life back then pales in comparison to the love I have for my wife today. The fulfillment I got from the "good old days" isn't even in the same universe as the fulfillment I get from being a daddy.  I'm able to write about the "good old days" with a new purpose, a purpose that wouldn't have been discovered if I continued to live in the "good old days".

Things would be a lot different today if I would have taken better care of myself in the "good old days". If I would have put my health first when I had the choice, maybe I wouldn't be forced to put it first today. Choices in life are a great luxury to have. When I had that luxury, I made really poor choices. Today, with that luxury gone, my only choice is to live a life full of treatments and exercise if I want to be the best version of myself each and every day.

I don't have many regrets in this life, but I do wish that I would have listened when they tried to tell me that the "good old days" pale in comparison to what God had in store for me.

I can promise you this - I would have made better choices.

Cystic Fibrosis ALWAYS Gets Worse

Cystic Fibrosis always gets worse. It can't get better once you reach ____% lung function. Once you start going into the hospital multiple times a year, you'll probably go multiple times a year for the rest of your (short) life. When you lose lung function, you can't get it back.

Any of that sound familiar? I really hope it doesn't, but I have a feeling that some of you have heard all of those things a time or two. I know I did growing up, and the sad part is, I actually let myself believe some of it. I fell for the part of CF getting worse year after year hook, line and sinker. I was reserved to the fact that I would lose a little bit (or a lot bit) of lung function each year and there wasn't much I could do about it.

I mean, that's what my friends with CF said. That's what I read on the Internet. That's what I heard some CF docs say. It must be true then right?

Wrong. It's wrong for so many different reasons that I don't have the time to list them in this blog, but I'll tell you the biggest reason that it's wrong...

I got caught up in thinking about all of the things that CF could do and lost focus on what I was doing.

That becomes the problem. When we are so concerned with what could happen with our health that we let it distract us from actually doing something about our health now, we have an issue. I totally get it as much of society is stricken with the "it-must-be-somebody-else's-fault" bug.

If we don't feel well, it has to be because of CF. If we're having a bad day, it must be because of CF. If we're mean to our friends, it must be because of CF. If we flunk a test, it must be because of CF. If our lung function declines, it must be because of CF. And on and on and on we go, blaming anyone and in this case, anything else, before we're willing to look in the mirror and realize that we're the problem.

It took me 8 years of declining lung function and 52 days in the hospital to realize that. It took me not being selfish for the first time in my life and actually putting a special girl's needs in front of my own by actually taking care of myself the way that I should. It got cemented when I brought another special girl into this world and made a promise to her that I would always work my booty off.

What's it going to take for you to change?

And I know, I know, there are people out there who will say, "I never miss treatments and I always exercise, but my lung function continues to get worse." Yes, that can be the case (I used to exercise and do my treatments too while seeing my lung function decline - I just wasn't doing as much as I obviously needed to). It however is the case that you're lung function will decline if you don't do your treatments and you don't exercise. . It is also that case that some people wait for far too long before they finally decide to "never miss treatments and always exercise". To be honest, I was almost to that point 4 years ago, but by the grace of God was able to fight back.

So what brought this blog on? I had my 1 month post-hospital clinic visit yesterday and for the first time in 12 years, I had a FVC of 92%. My FEV1 was 75% which is still up from my "baseline" of 50% in 2009 that they said I'd probably stay at. They were wrong.

If you'd like to get healthy, do what you do in spite of CF. No matter how CF decides to act tomorrow, you just make sure to out work it. If your disease is being a little more aggressive, than you must be that much more aggressive. If things are getting better and CF is slowing down a bit, celebrate by kicking it's booty even harder.

I know you can do it, now you just have to believe that you can and will do it!!

How Could I Choose NOT to Exercise?

One thing about exercise...it usually sucks while you're doing it.

I know I can attest to how sucky it can be. It doesn't matter if I'm running, lifting weights, biking, hiking, doing a class or an array of other activities, the "present" usually stinks. I don't know about you, but when I exercise, I experience the following:

Pain from sore muscles
Pain from stiff joints
Some type of back pain
Light headedness
Eye stings from sweat
Shortness of breath
Coughing my head off
and the list goes on...

So as you see, I don't enjoy exercise. Well, let me back up. I certainly don't enjoy exercise while I'm exercising.

I've been on the record many times about two things regarding exercise, I only do it because I love my wife and daughter and, there is NO DOUBT that it's the best thing for my health. When I'm healthier I'm a better husband and father. On the days that not a bone in my body feels like going to the gym, I figuratively, and sometimes literally, slap myself across the face and say "it's not about you!".

See, my present (both from God and in time) is what inspires me to exercise, but it's my past and future that I often think about when I'm in the trenches. When my energy is zapped and I feel like I can't push anymore and when the pain feels like it has blown past my threshold, I often think about how good I'll feel when I'm done and how terrible I feel when I'm not committed to a life of exercise. The great thing about an exercise "high" is that it often lasts all day. Sure, you're maybe a bit tired. A slight worn out feeling. But I assure you the benefits of exercise are working even when you're not. I don't know about you, but when I exercise, I experience the following:

More energy throughout the day
Better sleep at night
More mucus production through out the day
Less viscous mucus
Ability to take deeper, fuller breaths
A sense of accomplishment
Increased appetite
Better "overall" feeling
Pride in myself
Honor (keeping a promise to my wife and daughter)
Better body image
More focus on other tasks throughout the day
and the list goes on...

Now, looking at the two lists, how could I choose not to exercise?

Sometimes You Can't Do It Alone (as well)

As many of you know Mandi and I started torturing ourselves exercising again as soon as I got out of the Hole a few weeks ago. We decided not to go it alone in our exercise routine and rejoin the GPT (group personal training) option at our gym. GPT opens up a wide range of other classes that mainly consist of booty kicking, high energy group classes meant for those that want a little more of a challenge at the gym, have high fitness goals and/or need a little extra attention from one of the many great trainers.

Our general class of choice is called Intensity and is 45 minutes of a variety of exercises at a frantic non-stop pace. For example, yesterday, in 45 minutes we had 3 minutes of break time TOTAL. The other 42 minutes we were doing exercises ranging from kettlebell swings to plank jacks to sumo squats to bar bell curls to decline pushups to straddle jumps. Needless to say, at the end of a 45 minute class, I'm sweating like I just ran across the entire Gobi desert with no water profusely and on a normal day, seeing some sort of star pattern in my line of vision.

This class in one that I love to hate. Every time we commit I'm hesitant (because I'm lazy and don't enjoy pain), but every time we do it, I ask myself why I ever stopped doing the class. Not only am I getting pushed in 45 minutes way more than I would ever push myself, but the benefits do not just stop there - I just simply feel better. I feel better throughout the day, week and hopefully, month and year. When I'm involved in the GPT classes, I'm a better husband, father, friend and human being in general (there's no actual proof of that last one, but I went with it anyway).

Simply put, there are some things in this life that we do better when surrounded by others. We need their accountability. We need their motivation. We need their energy. We need their encouragement. We need their strength. We need their help.

If you're the kind of person who struggles getting to the gym by yourself, stop going it alone. Join some classes. Meet some people. Ask for help. Get a trainer. Commit to two weeks of exercise instead of a lifetime. Go to the gym and sit instead of sitting on your couch (it's more expensive, but at least your at the gym). Stop thinking about how bad it will feel at the time and start thinking about how great it will feel in due time. Side note: I started walking normally again after my first intense workout after about 6 days. It happens.

I promise you're worth it and the person at the gym you haven't met yet that will hold you accountable thinks so too.

Did God Give Me Cystic Fibrosis?

Once in a while I get questions that really get me thinking. This was such a question. I'm no theologian or Bible scholar, but I have a deep love for God and believe in His deep love for me. I also don't think He makes mistakes. Most importantly, I don't think I need to know all of the answers. I only need to know one thing...God is in control and His eternal plan is a perfect one.

Question: 

I just finished having a really deep intense discussion with my 14 year old son (with CF) about God. Little by little he has started to share with me his doubts about God. After much probing by me I realized that some of his doubts are coming from the fact that he doesn't "get" how God who is suppose to be loving gave this disease to people. I answered his questions as best I could.  

You seem to have such a strong faith now; did you ever question if there was a God and how people could have this disease? If so how did your questions get answered?Any insight is appreciated!

That's a tough one. My perspective on this may be a little different though...

Problem is, I never once thought the CF was a terrible disease. I simply was raised to believe the opposite and my mom did a great job of always pointing out the opportunities that CF afforded me (I'm not saying that you're not doing that). She was always quick to point out the man that CF was molding me into. Quick to remind me of all the people I would have never met had it not been for this disease.

As far as my faith, I don't think God gave me CF. Sure, He allowed it to happen as He could have stopped it, but He didn't. I believe that CF is more of a tool used by God to shape my heavenly body than it is to destroy my earthly one.

He also promises to work ALL things for the good of those who love Him. It never says that everything that happens is good, but we serve a God that can take 100 bad things and shape them into something that brings Him ultimate glory. And that's what this life is all about for me. God shaping me into the man that will ultimately receive the joy of worshipping Him for eternity.

I don't get caught up too much in my suffering or the suffering of those around me. This life on earth is but a blink of an eye, and in the big picture, pretty "insignificant". I'm not living for the here and now, but the later and forever.

The one time I questioned God and His works was when my 16 year old cousin died in a roll-over car accident. It was sudden. We didn't have anytime to prepare. She was young, vibrant, beautiful and had a huge heart for the Lord. I wondered how in the world God could ever use that for His glory. I questioned why He would take someone who could end up doing so much for His Kingdom here on earth. I brought these and many other questions to my pastor.

What he said solidified my view on my own life. He said that each of us have a race to run. Some run it faster than others. Because some run faster, they will finish the race first (die). We're all running towards the same finish line, and as all of the other runners, the goal is to cross the line. Whether we finish first or last is of no consequence to God, it's that we finished and finished well. He watches how we are running. Once we cross that finish line we will be in His presence and get to hear the words that we all want to hear more than anything, "Well done, good and faithful servant."

When I took the focus off the death of my cousin and the sadness it created for me, I was able to see the joy it was bringing to her and to my Savior. He wants us in His presence more than anything else. The fact that my cousin got to see His face before me may be because she ran such a darn good race!! I may also never know why she was taken from this earth so soon, but I do have faith that God is true to His word and will work ALL things for the good of those who love Him and have been called according to HIS purpose.

So, why does God allow me to have CF? I don't know. I do however know that He doesn't make mistakes. I do know that He views me as a perfect creation formed in His image. And finally, I do know that one day, all will be revealed to me and will be more clear than it could ever be here on earth.

Like I said, this is a tough one, but hopefully something I said here will help you and your son.

My Journey to Compliance

Guest blog by Aubrey Bean

I want to start by first thanking Ronnie for this amazing and inspiring blog, and also for the opportunity to share my story.

My name is Aubrey, and I am a 24 year old from a little town in NH. I was diagnosed with Cystic Fibrosis when I was six days old, after I had surgery for meconium ileus. I was a healthy and (very) lucky kid, always having high PFTs and never having to "work" for them. I started enzymes when I was born, but didn't start any nebs or the vest until middle school. I had IVs when I was 8, 16, and 19, and those PICCs weren't because I was sick, but because my numbers happened to slip slightly below my 100% baseline. I spent my first 20 or so years of life being blissfully unaware of the possible repercussions of this disease. However, throughout my 4 years away at college, when treatments happened when it was convenient, and exercise happened never, I slowly saw my lung function decline to 85%. Every appointment I repeatedly promised myself that I would get it back up “eventually.”

Finally “eventually” had to happen now, when in my last semester of college the noncompliance and hatred for any kind of exercise finally caught up to me. In May 2011 when I was a college senior, 2 weeks before graduation, I saw numbers that stunned me, and even caused me to shed a few tears. I blew a 61%. I was sent into the hospital shortly after I graduated college, and was even more stunned by the fact that after 4 weeks of IV antibiotics my numbers improved only slightly. To make a long and pretty complicated story short, I spent the next 7 months in and out of the hospital, including close to a week in the ICU with pneumonia, unable to get out of bed. I spent those months battling a few different medication allergies, new bacteria, and even a fungal infection in my lungs. Finally in January, after my third case of pneumonia in less than 6 months, at 34% lung function, I made the difficult but necessary decision to quit my job, one I had been offered in October. I hated that I had to quit my job. I hated the fact that I lost 50% of my lung function in just one year. But more than that, I was scared that it would never come up again.

  

During my hospital stay in January 2012, I constantly heard the voices of multiple doctors telling me that pneumonia causes permanent damage and they weren’t sure how much lung function I would be able to recover. I even had one of them tell me I should shoot for 50% lung function, but not much higher. I left the hospital hearing those words over and over in my head. Their voices became an echo, at first scaring me, but suddenly I turned it around, and those words became my motivation. I realized that all I could do was try. I thought even if these doctors are right, I at least want to make a strong effort to prove to them and most importantly to myself, that no matter how much CF knocked me down in the past year, I was going to stand up and try my best to come back. So that’s what I did. I started to exercise (with the help of RSBR and other awesome CF blogs!) and made a vow to never skip a treatment, unless it was absolutely necessary.

I started slowly, walking on the treadmill until my lungs started to ache. My walks started getting longer, and feeling a little better. After a few weeks of just walking, I started to run, (slowly) and soon I was running very small lengths at a time. It was hard and extremely challenging. A couple times I almost made myself sick I coughed so hard, and other times I spent my ride home from the gym crying, wondering why I couldn't do more than walk. I was frustrated more than satisfied, and I was in pain more than comfortable, but I wasn't giving up! I continued to run more, and exercising became a lot easier and more pleasant within a few months. I kept at it about 5 times per week, and it was all worth it when in August of 2012 my hard work paid off and I ran a mile for the first time. Ever. Today, it is still worth it.

Sitting here writing this today, I'm reliving my 2011-2012 journeys and I realize just how different my life is, and how different my lungs are! I got another job in November, and have not been sick once. Also, last week I went to clinic, and I blew FVC 80 FEV1 65 (And I’m shooting for higher next time!), over 30% higher than last February. My PFTs increased by that thirty percent because of hard work, patience, a lot of faith, and a lot of treatment compliance. In the last year, I have missed one treatment (for my sister's wedding!!) and last week I ran 2.5 miles on the treadmill.

My last hospitalization was January 2012. Coincidence? I don’t think so!

In the last few years, CF has taught me so much about myself and life in general. I've learned life lessons I never would have learned otherwise. I have also learned that as much as I am being pulled in so many directions every day, I know that treatment compliance and exercise are the most important aspects of my life to never let go of, and I am very grateful for that lesson. I've also learned that although CF is tough, and may knock me down sometimes, I have proved to myself that I am tougher and I will always try my hardest to fight back.

Bio: My name is Aubrey and I am 24 years old. I live in southern New Hampshire, and have been seen by doctors in Boston, MA my whole life. I graduated from Merrimack College in North Andover, MA in 2011, with a degree in Spanish. I am currently employed at a bank in NH and I really like it! In my free time I like hanging out with friends, family, and my dog, singing, dancing, shopping, and of course working out and trying to stay as healthy as possible!!

Note from Ronnie: I can't thank Aubrey enough for sharing her story with us. We're seeing this type of story happen more and more, so I hope that it's a huge encouragement for the community. Maybe it can also serve as a wake-up call to those in college who have put their health on the back burner. People ask me all the time where they can find motivation - well, here it is!! The proof is in the pudding so they say. Thanks again cyster!!

Interested in contributing a guest blog about you and the fact that you kick some CF booty?!? Email me your blog idea at ronnie@cysticlife.org.